HealingWell
Search Close Search
☰

low platelet count - update

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/8/2009 1:34 AM (GMT 0)
I had an ultrasound done of my abdomen on Monday.  They were looking to see if my spleen is enlarged and causing my platelets to drop.  Turns out I have a total normal spleen and all my other organs are normal too.  So the spleen is not the cause.....

 

The other possibility was that the Neurontin I was taking was causing it.  I've been off the stuff since last weekend, and when I had my blood tested on Monday, the results were good!  Platelets are going up.  From 47 last Friday, to 80 on Monday.  No where near normal yet, but at least it's going in the right direction.

 

Sooooo, I'll get my blood tested again on Thursday and if everything is still improving, we're going to chalk it up to the Neurontin!  How crazy is that?!  1/1000 people will have thrombocytopenia from taking it.  I'm always that 1!!! LOL!

 

I'll let you know what happens next!  But I'm feeling very encouraged. smilewinkgrin

Posted 7/8/2009 2:18 AM (GMT 0)
Ginny,
You're one in a million!! (Well, at least 1,000) Glad you're feeling encouraged! Judy
Posted 7/8/2009 2:32 AM (GMT 0)
Ginny, Judy is right, you ARE one in a million! I'm glad they are on the right path to finding out what was causing the problem! hugs
Posted 7/8/2009 3:26 AM (GMT 0)
Hi Ginny,
I too had a low platelet count when i was 22. I was told it was due to my having lupus (thats wheni first was diagnosed). My platelet count was in the 7 thousands. Prednisone brought it back in a few days. Glad to hear that your doing better. Will keep you in my prayers
Posted 7/8/2009 3:23 PM (GMT 0)
So glad they are almost to the point to find the culprit. It's nice when it's a med so we can just stop it and get better. Is this a med that you need? Is there an alternative to Neurotonin that you can take? Good luck on your next blood test and hope to see those numbers rise :)
Posted 7/10/2009 1:34 AM (GMT 0)
I think we have confirmation that my low platelets was due to the Neurontin.  Got my test results back today and they've gone up again to 90.  I'm still supposed to get checked once a week until I hit normal ranges just to be cautious.

 

What's really interesting is that I'm not experiencing any horrific pain now that I'm off it.  Maybe it's all the exercise I'm getting that's helping with the pain.  So for now I won't need an alternative pain med.  Good things are happening!

Posted 7/10/2009 1:39 AM (GMT 0)
That is great news! I'm so glad you're not having pain and going through the whole ordeal of finding a med that works. I did not realize that neurontin could affect your platelet count. Judy
Posted 7/10/2009 1:42 AM (GMT 0)
Thanks Judy!  I know!  I had no idea too.  In fact, neither did my doctor.  She asked if I had started any new meds in the last year, and I had.  Neurontin and Zoloft.  So she looked them up in her mamoth drug book.  Zoloft had zero indications of thrombocytopenia.  Neurontin had 1/1000 chance of it.  You know me!  I'm always that 1.  I see my family doc next week. He's the one that prescribed the med to me.  He'll be surprised and relieved!
Posted 7/10/2009 5:08 AM (GMT 0)

Ginny, I just tried taking 50,000 units of Vit D weekly to improve my level for the second time.   Once again, it made me feel terrible, causing additional muscle pain, fatigue, flare etc.  My rheumy told me 4% of people have that response - and so they generally never see it, but it isn't unheard of.  Lovely being unique, eh?

Glad the puzzle seems to be solved for you!

Lucy

Posted 7/10/2009 9:19 PM (GMT 0)
Thanks Lucy.  I hope it's solved too.  The next step if this comes back is a bone marrow biopsy.  NO THANK YOU!!!  I will pass on that thank you very much!

 

I wonder why the vitamin D is making you feel so yucky?  Being unique blows.  Totally over-rated. LOL.  I just want to blend in for once! smhair

✚ New Topic ✚ Reply